Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@Top maintenance chemo has made me a lot fatter. I have monthly reviews and the nurse always asks in a serious voice, 'do you need any anti-sickness tablets' when the reality is I could do with appetite suppressants!

@LarryStylinson I have ovarian

I think my under arm is infected. It hurts all the time. If I love my arm it hurts more but if I'm just sitting down my pain is probably 3/10. When I move it it's definitely a 7-8/10.

I'm out of hospital now but I think tomorrow I'm going to call the hospital and ask if someone can look at it, it's starting to smell funky so maybe I need some more antibiotics? Did anyone else struggle with mega pain after a lymph node dissection?

@FangedFrisbee I had a lot of swelling and an infected seroma after my total node removal. Is there much swelling in your armpit or side? I also got nerve pain which is still there two years later and goes from my side up into my shoulder then down my arm. I was told not to use that arm for six weeks but I got on my bike and rode from two weeks so I caused a lot of damage. Don’t follow my example! Take it easy

Thank you very much everyone for answering. I've got endo cancer and I'm struggling with the idea of some of it.
. I've got my treatment plan and starting to get nervy - radical hysterectomy in a month, then after healing internal and external radiotherapy. Chemo depending on biopsy results of what they pull out.
Hysterectomy not too scary for the op. Managing childcare and letting other people in my space to look after me too when I get home - freaking terrifying (I'm autistic. Don't play well with others in my space 🤦)
The internal radiotherapy feels like a really scary prospect too. Radioactive Vagina. Good name for a heavy metal band.
Not so much for my body!

Anyway. I'm always blown away by how busy and positive you all are. Hope it's a good week ahead 😊

@LarryStylinson I get that about finding it hard to allow people in your space. I think there’s a lot of mental adjustment involved in going through treatment which can be really hard. Mind is that I like to be in charge/control (feel more anxious as a passenger than a driver for example) and I’ve had to get used to giving that up. It must be even harder as an autistic person.

I am doing couch to 5k and managed to run for 21 mins this morning. (Week 5 run 3 plus a minute just because) Felt pretty pleased with myself. Might have to have a pause during RT as I’m not sure I’ll be able to wear my running bra.

@LarryStylinson I had internal radiation (Brachytherapy) for Cervical Cancer. Was a scary thought but it was actually fine.

I had 4 chemo, 25 radiation (every week day for 5 weeks) and 3 Brachytherapy sessions.

Give me a shout if you have any questions.

I start my radio tomorrow. Does anyone have any tips? Will I be able to exercise or will my skin be too sore? (I barely need a bra especially if cycling or walking instead of running) typically I’ve come down with something and feel really fatigued today 🙄 hand foot and mouth is going round DD’s nursery so I hope it’s not that!

@LarryStylinson Radioactive vagina does sound like an excellent name for a band!

Work out what you will be happy with when it comes to letting people in to help now so you’ve got some take up time.

I plan everything a week at a time - what food we’ll eat, who is doing school run each day, who is walking dogs if I feel a bit rubbish, who is giving me a lift to blood test. It helps keep me on an even keel knowing everything is organised and I can get busy resting.

Hi @LarryStylinson I had endometrial cancer, 3A1, with the Royal Marsden finding a tiny spot of ovarian when I asked for a second opinion. I had chemo but refused radio on the basis that it wasn’t v near my cervix and the figures for my type / stage / grade and various other factors didn’t seem to warrant the risk of side effects. I might have made a different decision about bracy though if the cancer was near my cervix. I turned down an internal check up in my follow up appointment on the basis that it was highly unlikely to find anything, I’m a survivor of sexual and domestic violence and I find it strange that such exams are seen as normal when they can be quite traumatic and the oncologist admitted that it was pretty pointless! They don’t routinely check 1A/1 for this reason, only if you’re worried about something.

@WorryMcGee I started my radiotherapy last week and I'm now 3 out of 5 sessions down. The evening of my first one I felt a bit off and then overnight was very nauseous and a bit sick I struggled into the second session and spoke to the radiographers about it and they said it was very unlikely to be due to the radiotherapy as side effects are normally very localised (for breast cancer radiotherapy at least), so I think it must have been a dodgy sausage and mild food poisoning. Since then I've felt completely fine, I've been drinking loads of water and smothering myself in emollient cream. My skin is a tiny bit red and maybe the scar from my sentinel node biopsy is a tiny bit sore but so far that's it. I've heard that fatigue and skin soreness can happen a couple of weeks following treatment, especially for short blasts like mine, but so far it's been ok.

@WorryMcGee I’m starting tomorrow too! Thank you for the insights @Atreus. I’m having 19 sessions and not sure if they’ll be working on the bank holidays but will hopefully get the full schedule tomorrow. Hope all goes well for you. I’m most worried about logistics and parking. It’s a bit of a schlep and the hospital is notorious for its parking problems (and no feasible public transport)

Thanks @Atreus! I have 10 sessions but it’ll be more than 10 days because of the bank holidays 😒

I’ve got the same problem @dotty2 - no public transport and a notoriously difficult car park. It’s an hour each way as well. If it wasn’t for the holiday I’d have waited for a space at my local hospital which is 15 mins up the road 🤦🏼‍♀️ hope you get off to a good start tomorrow!

@WorryMcGee you might find they will do Radiotherapy on a bank holiday. I spend my August bank holiday doing 6 hrs of Chemo followed by Radiation. Fun times.

@JlL2013 they told me it wasn’t running on the bank holidays ☹️ I hope that’s wrong as it just drags it out even more missing those two days

@WorryMcGee might depend on the place of treatment but it was business as usual in Bristol (am not sure if that's a good thing or not)

Hello everyone, I stopped posting a few months ago after going on to yearly checkups with my ovarian cancer but I still occasionally pop in to read up on how you all are.

I just wanted to comment on check ups following a stage 1A Ovarian cancer diagnosis as I think it may depend on where you are in the country, perhaps even the world.

Following my staging laparotomy and diagnosis I had check ups including vaginal and abdominal ultrasounds and blood tests every 3 months for 2 years when I then went on to annual check ups - not that I’ve had one yet. It’s still nine months away.

with love and best wishes to you all.

Thanks @PollyThePixie - sorry I wasn’t clear, it’s actually the 1A/1 adenocarcinoma endometrial cancer that they don’t do routine checks for, though you’re getting much more than me for the ovarian. I think I need to speak to someone as presumably it should be the same across England at least.

I have to get this off my chest. I'm sick of my husband. I'm 31, this cancer has floored me. I've had 2 major (to me) operations, iv what a lot of pain and a lot of sickness and feeling like utter shit from both the operations and the medications I've been on.

He's been out this afternoon with his friends to watch the football and ordered us a takeaway. There were no clean plates in the kitchen so I said he such wash up some dishes and cutlery. He went mental and told me he was disgusted in me for letting the kitchen get so disgusting, apparently I should have been keeping up with the cleaning whilst I've been off work because it's 'disrespectful to him'

I feel like telling to get to fuck and just stay away from me.

Sorry that was a bit much

Sorry @FangedFrisbee That sounds really tough. A bit much? Well, I guess that depends whether he’s often like this or whether what he said was just an aberration?

Sorry your DH was so horrible to you Fanged Cancer seems to show whether you have a supportive husband or not and lots of relationships seem to break though if its a one-off alcohol related I'ld probably just discuss when he's calmer. Also do what works for you but look after yourself if he's being like that.

@FangedFrisbee i’m really sorry your H is being an arse. I separated from mine due to his infidelity 2 months before my diagnosis but although it has been hard going through this alone I think he may well have made things worse. It’s hard being with someone you can’t rely on in a crisis.

Sorry @WorryMcGee, that’s terrible. Studies show that women cancer patients are six times more likely to get divorced than male patients, seems we are expected to be the support humans even when we are in need of support ourselves. I haven’t got a DP, but my family of origin still seems to expect me to do the supporting even through cancer because everyone else’s needs are more important and/or I’m more capable (but only because I’ve had to be) 🙄

@FangedFrisbee I’m so sorry. He can absolutely get to fuck. How dare he.

@SierraSapphire wrong tag, the only thing I can’t complain about at the moment is my DH. He’s been amazing despite being unwell himself (brain tumour then torn carotid artery). Not that our marriage is doing brilliantly as I won’t let him come near me because I feel so hideously ugly, so we’re more like housemates sharing the care of a tiny human but that’s another story.

Sorry to your DH and you! No idea how I did that! Obvs to @FangedFrisbee